Advocacy organizations have long played a role in advancing care and research for patients affected by rare disease. Angioma Alliance has served traditional functions of organizing scientific meetings creating shared resources like tissue bank patient registry. Uniquely, the organization employed creative engagement methods subsidized genetic testing as well targeting special populations to exp...

many patients with known angiomata of the brain lead a useful life, and unless it is proved that their life is threatened. or their capacity for work progressively diminishing, do not need removal of the angiomata. in the course of removal of an intracranial hematoma the angioma should be removed if identified. at such a time the removal is easy as the vessels are collapsed. when there is a def...